Vegas

I am by nature not one to entertain depressive thoughts, at least not for long.   I have always felt that the best anti-depressant is action.  So, when I was diagnosed with cancer over a year ago-  I began to do an enormous amount of researching.  I made compulsive lists of things to prepare for each treatment.  I rearranged my bedroom anticipating the need for a comfortable place to heal.  I bought art supplies preparing to meet trauma head on with prismacolors and permanent markers.  I also found support groups, both in my community and online.   Breastcancer.org has online forums organized around types of treatment, receptor status, stage, question, etc.  I joined a group of women who all started chemotherapy at the same time.  

I can not overstate the importance of these women in my life.  Anytime I had a question, I would post it and find answers.   They would validate the crazy feelings that were at times overwhelming and help me feel sane again. (I typed many a post while sobbing).   They would offer support and make me laugh at the absurdity of our situation.  And when so many of my "real" friends all but disappeared, they were there and ready to offer me a big virtual hug whenever I needed it.

At one point, when things were super rough, one of the women comforted another woman with a promise... that next year, we would meet in Vegas.  Exactly one year from the month that we began chemotherapy, fifteen of us packed our bags, boarded planes from all over North America and Canada and met in Las Vegas, Nevada for a long weekend. 

I wondered on the flight what it would be like to meet these women.  Would it feel awkward?  Would I have things in common with them aside from cancer?  Would they understand my weird sense of humor?   Any fear I had was quickly put to rest.  These women were amazing - and I felt so proud to be in their company.  We talked about how our club had the worst initiation rites of any club we had ever heard of.   In many ways, I was shocked at how much it felt like I had always known these women.  But, I guess it makes sense.  We have shared a traumatic history and through that, our friendship has intensified in ways that most can't understand. 

I also felt, for the first time in over a year, normal.  I was surrounded by fourteen other women who understood.  I laughed when one of my friends tried to play the cancer card to get an upgrade at the rental car counter.  I showed my scars without feeling I would need to take care of the other person's reaction.  I could talk about cancer without worrying that I was boring or too self indulgent.  I felt like I could breathe- and I am beyond happy that I went.  I am looking forward to meeting again next year. 

Coming back home was difficult.  So much of the trauma of the last year has left me anxious and broken - and yet I often feel that there isn't time or space to really co-exist with those feelings.  I instead find ways to pretend that they don't exist.  Last week on Wednesday, I became emotionally overwhelmed.  I had no idea what triggered the feelings.  I thought perhaps it was all of the emotions of this past month - the death of Zinn, my amazing trip...  It wasn't until Saturday that I realized that it was exactly one year ago on Thursday that I had my first chemotherapy infusion.  Although I may try to repress these feelings, my psyche has not forgotten.

My Cat

I haven't written a post in a while.  I feel a strange mix of emotions regarding this fact.  When I first began writing this blog, thinking about cancer was all I did.  I was constantly researching medications, research trials, and symptom relief and I was making a lot of art to cope with the overwhelming nature of being a cancer patient.  Today, I find that I am back to being overwhelmed with the "normal" day to day rhythm of living.  And I guess that is something to be thankful for.

But there are moments where I am reminded of my status as survivor.  It would be nice to say that these moments are infrequent, but in actuality, they happen many times a day.... the doctors appointments are still frequent, the lingering side effects of chemotherapy continue, the fists full of vitamins, supplements, and medications that I take every evening, and the fears of recurrence.  And although I try very hard to use any and all defense mechanisms to keep thoughts of death at bay - they are still quietly present.

This last week, death came and took my beautiful cat, Zinn and broke the hearts of everyone in my family.  The death of a pet is often the first experience that a child has with death.  And when your family has been struggling with a life threatening illness, this concept can be extremely provocative.  I knew that I needed to be careful with my children.  I needed to find ways to talk about the death of Zinn honestly, allow space for mourning, and discuss ways to move through grief.  Although I am not planning on dying until my children are old with children of their own, the way that our family handled Zinn's death felt beyond just important. 

My husband called to tell me that Zinn had died.  He was at the vet office. I realize that my husband's insistence that we try everything we could to save Zinn had a great deal to do with what an amazing friend Zinn had been to him, but also might have had a small part to do with how much my husband wanted to feel he could protect his family from death. One thing that cancer has taught me is the importance of making decisions based on what I value.  Although I have hardly any vacation days in reserve, I needed to be with my husband.  So, I left my office and drove directly to the vet office. We both said our goodbyes, I kissed Zinn's forehead and stroked his paws, we made arrangements for Zinn to be cremated, and then my husband and I went home together.  We lay in bed in each others arms telling stories of adopting Zinn.  We talked about how frightened we were of bringing our daughter home from the hospital, since Zinn was always a bit wild.  But Zinn was amazing with our children.  He adored my daughter and if she cried, he nipped at our heels until we helped her.   We talked about how to tell our children. We cried.   My husband wanted to go to the ocean.  And since the ocean is my healing place, it seemed like a good idea. 

We picked the kids up from school and told them the news as we drove to the ocean.  My daughter was extremely distraught.  My son didn't quite understand.   At the beach, we wrote Zinn's name in the sand... we drew pictures of cats... we shared stories... and we expressed gratitude for having such wonderful family member.
  

11 years ago, Zinn had a terrible reaction to Ketamine, the anesthesia they gave him during the neutering process.    Zinn was paralyzed and blind when we picked him up from the veterinarian.  The vet couldn't tell us for sure what might happen.  We were hopeful - and we were able to nurse him back to complete health.  I feel so lucky that we had the last eleven years with Zinn.  I wish it had been more.   My daughter remarked how there are moments where she is so sad and then moments where she forgets. We talked about how those moments of sadness will lessen and will be replaced with all of our wonderful stories about Zinn and how much we loved him.  My son tells me that Zinn will return on his birthday because my son will bring cat treats.  I gently tell him that Zinn died, and won't be coming back... but that we can remember him in our hearts forever.    I will miss Zinn.  My beautiful wild cat.  And one day, when I do die (which again will be like fifty years from now), I take comfort in feeling that maybe Zinn will be there waiting for me. 

Cancerversary

I had always been lumpy bumpy and so when the doctor found the lump, I was worried - but not super worried.  I hadn't gone for my mammogram because I was breast feeding, and because I was breast feeding, I had convinced myself that I had a certain level of immunity against such things as breast cancer.  I decided to get the mammogram after my son's tonsillectomy.  I only had enough bandwidth for one major issue at a time.  So, once he was out of the hospital, I made my appointment. 

When the doctor wanted to perform a biopsy immediately, I became more concerned.  It wasn't my first biopsy.  I have had several biopsies.    I tried to calm myself by remembering that all of the biopsies to date had come back negative.  Why would this one be any different?  I left the office concerned but within a day, I had determined that I simply had fibrocystic breast disease. 

The doctor called me two days later on Friday, August 3rd.  I remember the kids playing and the living room being too noisy.  I took the phone into my bedroom and sat on the edge of my bed.  And she told me.  "The results came back from the biopsy, and I am sorry.  It is cancer."  She didn't know much more than that, but wanted me to have the preliminary results so I could make the necessary appointments with an oncologist, surgeon, and radiologist for that Monday.  My husband had followed me into the bedroom and was sitting beside me on the bed.  I remember him holding my hand and searching my face for clues as to what was happening.  "I have cancer."  The doctor told me that she felt I would be okay... and that she had seen people in much worse shape than I was.  Knowing someone out there was suffering worse than I was did very little to comfort me.

The tears came after I hung up the phone.  Not dainty pretty tears - but the kind where your mouth is wide open and your nose is dripping and you look like hell.  I felt like I didn't have bones.  That entire weekend is foggy to me.  I remember calling family.  I remember the late night internet searching.  I had no idea what any of this meant.  I just knew that I had cancer.  It felt unbelievable.

Two days later, I met with my first team of doctors.  They stated that I was stage 2 and had lymph node involvement.  They would begin with surgery, then do chemotherapy, and follow up with radiation.  I felt like I had entered some type of weird breast cancer factory.   I decided that because they didn't have any kleenex in their office, that they were not the doctors for me.   My husband made me an appointment at Stanford.  I will forever be grateful.

Unfortunately, Stanford staged me as stage 3.  They recommended neo-adjuvant chemotherapy, then surgery, and lastly radiation.  I remember thinking, "Okay, I will take four months off of work and then things can go back to normal."  I didn't actually return to work until 10 months after my diagnosis - and I am not nearly done with treatment.  I am still getting infusions and have additional surgeries planned for later this year.  I will be on tamoxifen for the next decade.   I live with neuropathy, difficulty sleeping, and pain in my chest.  My joints feel as if I am eighty years old.  And the worse side effect of all is the fear.  Anxiety has replaced the cancer that had once taken up residence in my body.  One minute I will be laughing with my children, and the next I am being emotionally hijacked by wicked thoughts of my own mortality.  

So what do you do for a "cancerversary"?  I have decided that I am going to celebrate.  For if they didn't find the cancer one year ago, it could have spread past my lymph nodes.  I am going to give thanks that I am cancer free.  I am going to spend the weekend with my family making memories traveling to the redwoods.  I am going to honor this woman who never ceases to amaze me with her strength and courage.  

A few nights ago, my daughter caught me crying.  She asked what was wrong.  I told her that I was sad because of all that we had been through in the last year.  I told her that I knew it had been hard on her as well as me.  She smiled and said, "Mommy, you did it.  You did chemotherapy, surgery, and radiation.  It was really rough - but you did it.  And now you know that you can do anything."  Pretty wise for a six year old.  

I want to dedicate this post to everyone who has been there for me this past year.  Thank you to my doctors who entertained all of my questions and treated me like someone intelligent enough to be given the information necessary to make good decisions about her care.  Thank you to friends and family for all of your prayers, positive energy, and words of encouragement.  Thank you for your phone calls, e-mails, facebook messages, cards, and packages.  Thank you for watching my children while I was at doctors appointments or in the emergency room.  Thank you to my family for flying to be by my side, shaving my head, and listening to me cry.  Thank you for the financial support that allowed me to focus on healing.  Thank you for telling me that I am beautiful and reminding me that I am strong.  Thank you to my children for making me laugh and for understanding when we couldn't do all of the fun things I would have liked us to over this past year.  I will make it up to you.  Thank you to my husband for being such a present caregiver, for sitting up with me in the middle of the night when fear wouldn't let me sleep, for dealing with my angry cancer moments, and for loving me through it all.  I am an extremely lucky woman.

Finding normal

"And once the storm is over, you won't remember how you made it through, how you managed to survive.  You won't even be sure whether the storm is really over.  

But one thing is certain, when you come out of the storm, you won't be the same person who walked in.  

That's what the storm is all about."  - Haruki Murikami 

Normal is such an interesting word.  What is normal for one person might feel completely absurd to another.  As a therapist, I understand that "normal" is subjective.  Everything from culture, time, and individual experience can color our perception of what is "normal".  And sometimes what we think is normal, can often be anything but normal when we are given some space to truly process it.  I have been wrestling with normality for the last couple of weeks...

I tried to think of a metaphor that would make sense for me.  I think some people might think of cancer as a train that is derailed... and that somehow after treatment, the train is placed back on its track and is asked to move forward in the direction it was going before the unlucky accident.  This just doesn't seem correct for me.   I feel like a kidnapping makes more sense.  One day you are just living your life and this sadistic maniac named cancer comes and kidnaps you.  All of the things you were concerned about prior to cancer are immediately placed in the low priority category.  You do what you can in those moments to survive.  You focus on blood counts, treatment options, and recurrence rates.  You are faced with mortality on a daily basis.  You meet other kidnapping victims, finding comfort in someone who shares this experience and you plot together how you might escape. And cancer doesn't just kidnap you alone.  It takes your whole family.

And then one day you are released.  Back to your old life.  After ten months of captivity.  But you are lost.  You aren't even sure about the direction you are supposed to be going.  And you are surrounded by people who don't understand.  They think they do.  But they don't.  They can't. Their conversations feel foreign to you.  In reality you are not really free.  You understand that cancer is lurking... and could decide in a moment to kidnap you again.  Maybe that is why I have this urge to move far way from where I am now.  Maybe then cancer won't find me or my family.  I am a trauma survivor.

There was an article I read in the New York Times recently about anxiety and cancer survivors.  It resonated with me.  I know that I have a lot of work to do to become comfortable with my new life... and even though cancer may linger in the background, I have to learn to shift my focus around the room to see all of the other things in the room aside from cancer.  I need to replace fear based decision making with decision making that focuses on what I desire in this life for myself and my family.    Although I know if I pack up the car and move across the country, cancer will move with me - I also know that finding ways to work less, be near family, and have more space for art and fun are the healthy options for me.  

There is another article about post traumatic growth, which is defined as "positive changes experienced as a result of the struggle with a major life crisis or traumatic event."  The notion that with trauma also comes ways in which our life is enriched.  Perhaps we become clear about our values.  We no longer want to postpone happiness.  I am definitely moving in this direction - but it will take time.

Moving forward

I haven't written in a couple of weeks.  Radiation was exhausting, and I feel like it has taken me a good month to get my energy back.  On top of this, the family went on a much needed vacation to Santa Fe.  We stopped off at the Grand Canyon - where I hoped to check in with the universe:  share all that I was grateful for, shed some tears about the last year,- but at 108 degrees, it was just too hot.  I did take some nice pictures and enjoyed my family.

Eleven months ago, I found out I had cancer.  Ten months ago, I said goodbye to  co-workers and took time off from work to focus on healing.  I knew that cancer treatment was going to leave me with limited energy.  I wanted to spend the little energy that I had on my family and my spirit.  I feel like all in all, I did a very good job of taking care of myself.  I have been present with the emotional reality but also allowed myself to laugh and stay grateful.  One of the most challenging parts of having cancer was the thing I hadn't even considered - how it would impact my relationships.  Some relationships have become stronger.  Others have almost disappeared.  I read a wonderful article on just this thing yesterday and thought I would share it here.  Someone in my support group the other day said that she has been able to find ways to become friends again with some of those that she lost.  At this point, that seems unimaginable... but I guess only time will tell.  I know I don't want to hold on to being angry.  Not for anyone else -but for myself.  Anger and hurt can feel like poison.  But I am struggling with this. Maybe it is just too soon.

On Monday, I started back to work.  It felt awkward... but how would it not.  I think there are ways in which many of us live our lives in a state of denial - like we are sleeping.  We think we have unlimited time to make our lives what we want them to be.  We have amazing dreams but put them aside as impossibility.  We think we are fine just existing in situations that no longer feel fulfilling because we are fearful of change or think it could be worse.  For many people they live their whole life this way... and then it is over.  Some of us are lucky enough that something happens.  We get shaken out of this sleepy state and are forced to look at the stark reality of what it means to be human.  Our lives are finite.  Postponing happiness creates sadness in the present.   Cancer has given me the gift of clarity ... and I hope that I never fall back to sleep.

Treatment is by no means over for me.  I still have infusions and surgeries and doctor's appointments... but life is returning to normal.  I just hope that I can find a way to create a new more wonderful normal than I ever had before.

Papaya Girl

I was diagnosed with cancer on August 3rd, 2012.   One of my most immediate concerns was how my children would fare through this journey.  I have worked hard to create an environment where my children are free to ask questions, explore, and grow into the people they were meant to be.  But how would my cancer impact their development?  How would they cope with seeing me struggle?  How much would I share?  How would all of our lives be turned upside-down?

I decided early on that I would talk about cancer with my children with honesty.  When asked about my hair, my daughter can tell you about how chemotherapy drugs work on fast growing cells.  When she sees me cry, she will swoop in and give hugs and let me know that she loves me.  My three year old son has thrown action figures down my shirt in hopes that "Spidey will fix your booby trapped cancer."    They are both incredibly compassionate and beautiful little beings and I thank all of the stars in the sky that they are mine. 

It hasn't been without difficulty.  My daughter on more than one occasion has come to me worried that because her grandmother had cancer (although an unrelated cancer to the one I have), and I had cancer, that somehow she is predestined to follow in our footsteps.  My children also understand that we must live frugally during cancer treatment - and due to my weakened immune system and lack of energy-  sometimes that means we can't travel, go to Disney land, or sometimes even to the zoo.  The anxiety, exhaustion, illness, and stress of cancer treatment often take me away from the type of parent that I want to be.  I can be agitated, impatient, and despondent.  Although I try very hard to rally - I am not always successful.  Luckily, my husband is a very affectionate and present father who is gifted at making our children laugh.  I hear them sometimes laughing when I am alone in my room - and it makes me happy and sad all at the same time.  But I am doing my best.  And my kids need me to prioritize rest and becoming healthy.

On August 11th, eight days after being diagnosed with cancer, I sent my husband an e-mail with a link to Camp Kesem.  Camp Kesem is a special camp for children that have a family member diagnosed with cancer.  They have chapters all across the country - run by students of local universities.  The camp is for one full week and is completely free of charge.  Once a child is eligible to go to Camp Kesem, they are guaranteed a spot at camp until they are in the ninth grade.  Although there is a day for honoring loved ones, the camp does not focus on cancer.  It focuses on allowing a space where these children can have fun, which is something that is often in short supply when you are dealing with cancer.  

Last night I carefully packed outfits, swimsuits, towels, a sleeping bag, and all of her other necessities and prepared her for camp.  She was so excited she could barely sleep.  I wanted to write her letters, but the camp said that letters can often make children more homesick... so I practiced restraint.  This morning, her father, brother, and I dropped her off.   Caya was greeted with a huge hug when we arrived at campus.  She met the other campers in her group and the counselors - and immediately began making friends.  She was laughing and happy. We waved at the buses as they drove away - her brother sobbing - me trying to smile and not sob with him.  I know she will have an amazing time.  This will be another one of the many positive things that has come out of this experience.  And in a few years, her brother will be able to join her.  I told her that she would be welcome to call us this evening if she wanted to.  To my surprise she  didn't.  I think she is probably having too much fun.  I hope she calls tomorrow.  I miss her.   

For more information about Camp Kesem - click here.
For previous book recommendations on how to talk to children about cancer - click here. 

Rad Grad

Last Thursday, I officially completed radiation - all 33 rounds of it.

I was so excited Wednesday night, I could barely sleep.  As I had said in an earlier post, I was more afraid of radiation than I was of chemotherapy or surgery.  But I was able to let go of my fear and be thankful for yet another weapon to insure that I live to be an old lady.

For the most part, the experience was far from terrible.  I had a wonderful radiation oncologist who answered my questions with enthusiasm and care.  I also had an incredibly sweet, funny, and professional radiation therapy team who were just as at ease joking with me as they were wiping my tears on both the first and last days of treatment.  And I also made friends with such loving and authentic people waiting each day for treatments or for the treatment of their loved ones - and they have each been in my prayers ever since.  And on top of all of that, my skin reactions were not nearly as horrible as they could have been.  I had one and a half weeks of extreme pain, tightness, and itching - but almost as soon as it arrived, it was gone.  Today, only three days after my last boost and a week and a half since my last full treatment, I am feeling pretty good.  The red skin is turning brown and in parts peeling as if I spent a long weekend sunbathing with one breast exposed like some Amazonian princess.  The hardest part about radiation is the having to think about cancer in an intense way every day for six and a half weeks.  

I stayed up late the night before my last session making stickers for my treatment team.  I created this little radiation monster, a special Frida "hope" sticker, and one with the sloth monster.  I also stopped off and got gourmet candy bars at Whole Foods for everyone.  I wanted to make thank you cards too but didn't have time.  So instead, I told everyone how much they meant to me, cried a ton, and got lots of hugs.  They gave me a certificate and a little bouquet of hershey kisses.  The radiation therapists took these lovely pictures so you could get a better understanding of how I spent these last six and a half weeks.  

This last picture is my view of the machine... which is why I wanted to give them a special sticker.  They were very excited about adding it to the collection - and I was happy thinking that perhaps my sticker would distract future women during their treatments.

Over the last six and a half weeks, I have driven a total of 1188 miles, paid $64 worth of tips to the valet parking attendants, used 5 tubes of miaderm (at $33 each), 2 tubes of calendula ($12 each) 3 bottles of aloe gel ($10 each), 2 bottles of rosewater ($10 each), 1 bottle of aloe juice ($10), 2 tubes of liquid lanolin ($7 each), used 2 cooling aloe pads ($25 each), ruined 6 forever 21 tank tops, and another 6 hanes mens tank tops and lost one glass water bottle ($14)... for a grand total of $439(not including gasoline).  Cancer is extremely expensive.  The costs for treatment  goes way beyond insurance co-payments and premiums.  I don't mean to complain - I feel extremely lucky that I was able to have such excellent care and found ways to afford all of those things that made my radiation experience doable.  I just thought that it was important to share that aside from the physical and emotional hardships that is cancer - there are also enormous financial costs as well.  I have also been lucky that I have been able to be off work this entire time.  I will return to work in July.  Am I physically or emotionally ready to return to work?  No... but it is what I will have to do anyway.

  I have finished the big parts of my treatment.  Since September, I have fought cancer with 6 rounds of chemotherapy, a double mastectomy, and 33 rounds of radiation.  Tonight I will begin tamoxifen - which I will take daily for the next ten years of my life.  I will continue to have my herceptin injections until September and will have more surgery in December.  It has been quite an adventure- one that I wouldn't wish upon anyone.  And now I have one month to recover and return to work.  Yikes.

Here is my final installment of the radiation tapes.  The songs on the Pandora alternative 80's station were beginning to get pretty repetitive- so I am glad that I finished up when I did.  I think I chose this particular station because it reminded me of being young and healthy - when I danced until 3 am, wore lots of black clothing and eyeliner, and my main worry was how cool I looked.

    

xo